Death Is No Laughing Matter.

But on DeathTok It Is.

Americans struggle with talking about death. To remedy that, some hospice nurses have taken to TikTok to soothe people’s qualms with macabre humor.

An unlikely group of influencers on TikTok is using cheeky skits and viral songs to change our relationship to mortality.

By Jessica Lucas

Casual TikTok viewers might think of the app as just a feed of Gen Zers doing viral dances and lip-synch reenactments. But the social network has also provided a space for some unlikely influencers: hospice workers, morticians, and funeral directors. These content creators hope that their comedic takes on mortality will help people who find death hard to discuss, especially during the pandemic, in which more than 900,000 Americans have died. DeathTok, as it’s called, is a corner of the platform where skits about end-of-life care, funeral arrangements, and death-worker mishaps bring comfort to those suffering through grief and loss, and clarity to those who are curious about an oft-avoided topic.

Our inability to plainly discuss death and its circumstances stems, in part, from the American ethos of self-reliance, according to Cole Imperi, a well-known author and speaker on the subject of death and thanatology. “We value the story of somebody coming to the U.S with $5 in their pocket and they make it … needing nobody,” she told me over Zoom. The end of life, Imperi explained, sits in direct opposition to this philosophy: As people age and approach death, they rely on others for help. The fear of lost autonomy (be it one’s own or a relative’s) makes planning for, grieving, and processing death hard for many Americans. “We don’t have a lot of practice with knowing how to talk about something that’s painful, scary, or difficult all the way through,” Imperi said. She believes that the humor DeathTok offers can be a useful tool for pushing through this discomfort. “Having humor is critically important when it comes to death and dying,” she said. “Humor is necessary. Humor helps us heal.”

Although some find death-based comedy unpalatable, many TikTok viewers agree with Imperi’s estimation that the levity of a well-placed joke can sometimes make difficult situations easier. When I spoke with Penny Hawkins, a 59-year-old hospice quality-control manager from Washington, she explained how she uses comedy to educate others. “If you’re talking about a really heavy subject like death and you’re able to put kind of a funny spin on it, it makes it a little more palatable. It’s not quite so scary,” said Hawkins, who has more than 300,000 followers on her nurse_penny TikTok account. She encourages viewers to be curious about human anatomy by explaining what happens to failing bodies. For example, to tackle the misconception that hospice patients need to stay hydrated, Hawkins danced to the viral song “Just Water,” by the TikTokers Bryansanon and Tisakorean. To caption her video, she wrote: “If your dying person isn’t taking fluids, that’s ok. Their body is shutting down and doesn’t need it.” The chorus, which repeats the line “It’s just water!,” serves as a whimsical background to Hawkins’s blunt explanation.

Three scrolling tik tok feeds with a hospital gurney and ekg machine in background.

Hawkins has also used macabre comedy to illuminate the realities of hospice care. In one video, about the use of morphine at the end of life, an exasperated Hawkins appeals to the camera and feigns anger at a family who wants to withhold morphine from a dying loved one out of fear that they’ll become addicted. “They’re suffering and they’re dying,” Hawkins’s caption reads. “Addiction is the least of their worries.” Hawkins told me hospice patients aren’t typically at risk of developing an addiction, because many of them are not in end-of-life care long enough to become addicted (for instance, the median length of stay for Medicare recipients in hospice is about 18 days). As uncomfortable and dark as the video may be, it underscores Hawkins’s overall message that learning more about dying bodies and end-of-life care can only help.

Beyond the medical aspects of death and dying, some videos also warn people about one of the largest hurdles after a loved one’s passing: logistics. Lauren Taylor, a 28-year-old former funeral director who lives in Florida, shares farcical family stories on TikTok—such as a quarrel between a mistress and a wife over the burial of a shared lover—to make the point that planning is key. “Being preplanned, having everything written down ahead of time, and letting others know what your wishes are is so important,” she told me over the phone. Taylor, who asked to use her maiden name to protect her family’s privacy, has more than 400,000 followers on her account, @lovee.miss.lauren, and said she has witnessed how traumatic unplanned funerals can be for families and wants to inspire forethought. “These comedic situations where you kind of wonder, Is this real? It happens more often than people think,” she said. “It can be comical to talk about after the fact, but when you’re living in the moment, it’s the most stressful thing ever.”

While DeathTok has been a useful tool for families navigating their relatives’ mortality, it’s also helped death workers themselves cope with the demands of their job. Julie McFadden, a 39-year-old hospice nurse in California, told me that of her close-to-700,000 followers, her fellow medics are the loudest voices in her comments section. “Any of my videos that are more dark, that could be slightly offensive to some, I’m always 100 percent supported by nurses,” she said. In one video, she recounts the time she noticed that a patient was dead even though the rest of their family did not (set to the audio of a person screaming “Don’t worry!” in a panicked tone). The clip spurred other nurses to share similar stories, and one thanked her for her “positive outlook” on such difficult situations. McFadden told me that though nurses are taught how to care for and save patients, many aren’t coached on how to handle death psychologically. “As a community, it’s nice to come together and make light of the things we know are messed up,” she said. “What else are we going to do if we don’t laugh about it?”

When death workers make these short, funny videos, they provide more than just comfort to their colleagues or the bereaved. Their TikToks can be soothing even for patients dealing with a terminal diagnosis. Val Currie, a 32-year-old undergoing treatment for Stage 3 recurrent metastatic cancer, told me that DeathTok provides a much-needed release, and has helped her have discussions with her partner about end-of-life care. “I’m learning to laugh at the process,” she said. If viewers can laugh at death, then they can talk about it. And if they can talk about it, healing may not be too far behind.

Complete Article HERE!

When the Death Certificate Omits the True Cause of Death

Having accurate death records saves lives.

By Jane E. Brody

A combination of journalistic curiosity and advancing years prompts me to read obituaries regularly. I routinely check for ages and causes of death that can help inform what I write about and how I live.

Increasingly, I’ve noted in published reports that people are often said to die of “complications of” some disease, rather than the disease itself.

For example, in an obituary published on Jan. 9 in The New York Times for Dwayne Hickman, who starred in the television sitcom “The Many Loves of Dobie Gillis,” a spokesman attributed his death at 87 to “complications of Parkinson’s disease.” And another, published two days earlier for Lani Guinier, a legal scholar and champion of voting rights, stated that she succumbed at 71 to “complications of Alzheimer’s disease.”

What, I wondered, does that mean? How is it recorded on death certificates? And does it result in accurate mortality statistics needed for assigning priorities for medical research and allocating resources?

I looked up the complications of Parkinson’s and Alzheimer’s diseases. Someone with Parkinson’s disease may have poor balance and die from a fall, for example, but Parkinson’s is actually the underlying cause of the death. Similarly, people with Alzheimer’s disease often have difficulty swallowing and may accidentally inhale food and develop a fatal pneumonia; such secondary infections are listed as the cause of death for as many as two-thirds of these patients.

The result can be seriously misleading information, said Dr. James Gill, the chief medical examiner for the state of Connecticut. While pneumonia may be the proximate cause of death, Alzheimer’s disease, which is why the patient developed pneumonia in the first place, is the “specific underlying cause that started the chain of events and should be listed as the cause of death,” he said.

In fact, one study from 2014 suggested that the real death rate from Alzheimer’s in 2010 may have been more about six times higher than the number of deaths reported to the Centers for Disease Control and Prevention. Likewise, if someone with Covid-19 develops pneumonia and dies, their death certificate might say that pneumonia was the cause of death, but in reality it was a coronavirus infection.

I asked Dr. Gill, who heads the College of American Pathologists Forensic Pathology Committee, why this matters. “In order to prevent deaths, we want to know what’s causing them, which influences medical practice and the awarding of research grants,” he said. “If many dementia deaths are hidden, the disease is not getting enough funding.”

More dramatically, Dr. Gill added, “Having accurate death certificates saves lives. It enables us to identify new and trending diseases and take appropriate action.” If someone is living or working in a building with a poorly installed or maintained furnace, for instance, they may be exposed to toxic levels of carbon monoxide that could eventually cause fatal cardiac and respiratory failure. The cause of death might be recorded as cardiac arrest, but in fact was a result of carbon monoxide poisoning, and the presence of the faulty appliance would likely be missed and could result in further casualties.

In a research review published in the magazine Today’s Geriatric Medicine, Dr. Emily Carter, a geriatrician affiliated with the Maine Medical Center, and co-authors noted that the data submitted on death certificates can affect families with regard to life insurance, estate settlement, genetic risk factors and finding closure. They estimate that major errors, like incorrect cause or manner of death, occur in 33 to 40 percent of death certificates that are completed at academic institutions like their own in the United States.

An analysis of death certificates at their own institution found that cardiac or respiratory arrest were incorrectly entered as the immediate cause of death on 11 of the 50 documents they reviewed. As Dr. Gill said, “Everyone who dies, dies of cardiopulmonary arrest. The critical question is: Why did this happen? Let’s say someone dies of a stomach hemorrhage. What caused it? Stomach cancer, an ulcer or what?”

There are many reasons for the high rate of inaccurate or incomplete death certificates, starting with the meager attention paid to the subject in medical school and the hectic pace in many medical settings. Speed is sometimes dictated by the need to release a body to a funeral home for burial or cremation.

The C.D.C. has estimated that 20 to 30 percent of death certificates, though not necessarily inaccurate, “have issues with completeness.” The agency stated that heavy workloads, insufficient information about a death or inadequate training can result in death certificates that are incomplete or inaccurate.

Furthermore, many deaths are certified by coroners, who are elected or appointed to their positions and may have bachelor’s degrees in forensic science, but are usually not doctors. They can be subject to political or family influence and may fail, for example, to list opioid overdose as a cause of death. Even when death certificates are completed by medical examiners, who are usually doctors, they may not be trained in forensic pathology and could miss the real cause of death. A death following a fall, for example, might have been accidental, or it could have resulted from an underlying disease or even homicide.

According to a blog post from Womble Bond Dickinson, a trans-Atlantic law firm with headquarters in London, “the death certificate may be critical in a lawsuit” to help determine “the nature of the death,” factors that contributed to it, when it occurred and illnesses that may have played a role.

If the death was the result of a medical illness, the death certificate is usually completed by the physician in charge, Dr. Carter and her colleagues wrote in their review. However, they emphasized, a medical examiner should certify all other causes, including deaths related to hip fracture which could have resulted from an accident, and deaths related to a history of malicious injury that could be a homicide.

Unfortunately, despite what you may see in films and on TV, autopsies today are performed less and less often. Families often have to pay for them out of pocket. Between the high cost of autopsies and the increasingly limited resources to do them, they have become a dying breed.

Families can often benefit from knowing the real cause of a relative’s or housemate’s death. Might there be a payout from life insurance? Is there a home problem, like a slippery floor, lack of grab bars in the bathroom or a faulty furnace, that needs correction? Is there an inherited medical condition that can be mitigated to avert further casualties? Could malpractice have caused or contributed to the death?

If a death certificate contains errors that warrant correction, the sooner that’s done the better. In New York State, the funeral firm or medical certifier can usually help with a correction request that’s made within six months of the death. Beyond six months, you would have to fill out an application for a correction.

Complete Article HERE!

Should You Get a POLST?

These portable medical orders give the seriously ill more control over their care

Blake Anderson, 64, lives with numerous medical conditions, including chronic back pain, the rheumatic disease ankylosing spondylitis, other autoimmune conditions affecting his tendons and nerves, and non-Hodgkin lymphoma, a lymphatic cancer. But although he is disabled and in pain, he says he deeply values life and has no wish to end his.

Residing in a board-and-care facility in Carlsbad, California, he has good friends and enjoys reading, conversation, learning new things and traveling the world via the Internet. But he also has a POLST form, signed by his doctor, spelling out the treatments he would not want to receive in the event of a medical crisis in which he could no longer speak for himself. Were his heart to stop beating, he would not want medical personnel to try to resuscitate him.

POLST is a medical form completed by a doctor, nurse practitioner or physician assistant in consultation with the patient. It allows people with serious or chronic illnesses or the frailties of age to spell out what kinds of medical care they would want to be given in potential future medical emergencies.

Unlike legal documents such as the more familiar living will or other advance directives, which can be completed by those in good health, POLST is for when a serious diagnosis is known to the patient. It is more likely to be recognized, read and honored by emergency responders who show up for that potential emergency, such as a heart attack, when someone calls 911.

And, POLST advocates say, it’s not just about saying no to interventions such as cardiopulmonary resuscitation (CPR). Some POLST documents may detail that the person does not want to go back to the hospital or be put on a ventilator. Other orders might note a trial period to see whether aggressive treatments would be successful. But patients can express their treatment preferences, including for doctors to “do everything” medically feasible to keep them alive, if that is what they wish. Ideally, the POLST form signed by the doctor is copied to the patient’s electronic health record and given to close family members and the patient’s named surrogate decision maker for health care decisions.

Bright pink (or green) forms

Anderson’s doctor, Karl Steinberg, M.D., a geriatrician and hospice/palliative medicine physician in Oceanside, California, who makes home visits for Scripps Health, visited him at home to talk about POLST. “When he found out that I would not want to be resuscitated, Dr. Steinberg told me about the bright pink form I could fill out and put up on my wall where it could clearly be seen,” Anderson says. “I didn’t know there was such a form until Dr. Steinberg told me. It took some worry out of [the medical situation] for me.”

Anderson says he feels he is doing well, all things considered. “I know there’s no cure for any of my diagnoses.” Were he to die of a sudden heart attack, he says, he would want to be left in peace. “In fact, I’d call POLST the ‘rest in peace’ form.”

Steinberg told Anderson that discussing goals for medical care is a routine part of his visits with older patients. “I’m a big proponent of POLST in my practice,” he says. But patients shouldn’t be shy about bringing it up to their doctors or talking about it with their families. CPR is not what it looks like on TV, Steinberg adds. “Most people with serious illness don’t survive even the initial procedure, much less get back to a condition of full, active life.” One analysis of over 433,000 Medicare beneficiaries 65 or older who underwent CPR in U.S. hospitals found the chances of surviving and being discharged were about 18 percent.

Honoring patients’ preferences

Devised in Oregon in the early 1990s by medical ethicists and clinicians who had discovered that patients’ preferences for care at the end of life were not being consistently honored, the typically brightly colored, letter-sized POLST form has since spread to most states (and to locations in more than 20 countries) in a variety of versions and names and stages of development.

It has become mainstream, at least among health professionals. The original name, “physician orders for life-sustaining treatment,” is sometimes replaced by “portable medical orders” or simply “POLST.” The National POLST office, which is leading efforts to standardize its dissemination and promote recommended national language for the states to follow, calls POLST a process and a conversation as well as a form.

POLST has a specific place in medical planning, adds Judy Thomas, CEO of the Coalition for Compassionate Care of California (CCCC), the home for implementing POLST in California. In recent years CCCC has worked to standardize POLST statewide, she says. “We also got it established in statute, which has helped to make health care providers more comfortable with it, knowing they were complying with the law.”

CCCC has also developed training for health care providers on how to have conversations about POLST with consumers and taught hundreds of people to go out and train others. POLST is becoming better known, and more people have seen it used for a loved one, Thomas says. California’s 2021–2022 budget included funds to develop a statewide electronic registry of POLST forms.

In Oregon, with its three decades of experience with POLST, nearly half the people who die of natural causes have a POLST form in that state’s electronic registry, password-protected and accessible to EMS personnel and emergency care physicians, says Susan W. Tolle, M.D., a professor of medicine and director of the Center for Ethics at Oregon Health & Science University in Portland.

“If we could encourage people to take a deep breath and step forward and say, ‘I really want to talk about this,’ it could trigger conversations in their families. COVID is one more reason why we need to talk about it now,” she says.

“It is a true gift if you can engage in advance care planning, which would help your loved ones feel they know what you would want in a crisis and that they are doing what you would have wanted,” Tolle explains. “They won’t have to wake up at 2 a.m. and wonder if they did the right thing.”

Complete Article HERE!

Every Adult Should Have an Advance Directive

Despite Recent Well-intended but Misguided Advice to the Contrary

The Sirens and Ulysses by William Etty, 1837

By Richard B. Stuart DSW, ABPP, Stephen J. Thielke MD, George Birchfield MD

Living wills are often the precursors to ADs. More advanced living wills, like the 6-Steps Living Will, help patients clarify their values and formulate personal statements that provide context for treatment decisions. Such instruments express patients’ preference for quantity versus quality of life, the scope of treatment the desire, i.e. aggressive, limited, or comfort care. and which treatments they want to undergo if their quality of life falls below a specified standard. They also include the appointment of an agent who fully understands the patients’ wishes and can serve as an advocate if necessary. These requests are then translated into medical orders that are scanned into electronic medical records. This is very different than being tied to a mast.

Despite the promise of ADs, reliance upon dichotomous “always/never” choices is one major conceptual problem limit in the most commonly used forms such as the POLST. The problem is that life often does not fit into black or white choices. Imagine the following situations.

55 year old Harold has a POLST that stipulates no CPR because he wants to avoid the rigors of a prolonged painful death. But while gardening, he is stung by eight wasps and suffers anaphylactic shock from which he will die unless resuscitated. Should he be allowed to die by following the order? Or should his wishes be over-ridden by an emergency responder who does not know him but believes that CPR could reverse his condition with good effect? The first option creates a moral problem, the second an ethical problem.

75 year-old Edith has a POLST that stipulates that she does wants to undergo CPR. She has just been released from the hospital following a trial of a fourth intravenous cancer drug being administered for an incurable cancer. Due to a medication error, her breathing stopped long enough to result in a high probability of irreversible brain damage. Her surrogate is aware of her desire to undergo CPR if she could return to her prior level of functioning, but not if she would be permanently immobilized and attached to a ventilator. Should caregivers condemn her to a fate she dreaded because of a medical error in accord with her POLST, or should they decide to ignore the order and allow her to die? This time the ethical and moral risks are reversed.

These cases are medically straightforward but ethical and moral issues arise because the orders are incomplete: they do not provide enough information to allow others to make appropriate choices for the patient who is silenced by a crisis.

In both life and medicine, many decisions are more wisely construed as “Always, Sometimes, or Never” choices. Although the POLST denies this realistic option, other tools allow it. The attached Conditional Medical Order (COM) was developed to account for the middle ground. Both Harold and Edith could have stipulated that they wanted CPR on the condition that it would overcome a reversible condition and restore them to their prior quality of life. They could also have stipulated that they wanted to be resuscitated regardless of the circumstances, or that they want to be allowed to die if their heart stops beating for any reason. The POLST leaves the decision in the hands of others who may not know patient’s references in these unforeseen circumstances: the COM allows patients to retain effective control over the care they receive and allows providers to make ethically and morally responsible decisions consistent with patients’ desires.

Nothing in healthcare is perfect. By selecting the “sometime” option, patients do delegate to providers the authority to use clinical judgment to decide whether resuscitation is in the patient’s best interest. But if guided by an awareness of patients’ values, and ideally in collaboration with surrogates, providers can make medically informed decisions about the likely impact of prolonging the patient’s life that accord with what the patient would have chosen.

The standard COM stipulates patients’ preferred scope of treatment, and includes orders for resuscitation, oxygenation, and artificial nutrition and hydration. It can be expanded to include other procedures such as surgery, dialysis, use of antibiotics, hospital transfer, and/or medical aid in dying if legal standards are met. Because it is a medical order, patients must have sufficient capacity to understand it, and it must be signed by a physician, nurse, or certified physician’s assistant. All patients can request a COM which is far the strongest option currently available to allow them to maintain control over one of the most important decisions they will ever make.

An editable COM can be downloaded without charge from: Stuart RB, Birchfield G, Little TE, Wetstone , S, McDermott J. Use of conditional medical orders to minimize moral, ethical, and legal risk in critical care. Journal of Healthcare Risk Management. 2021;(1):1-12. DOI:10.1002/jhrm.21487

See, too: www.6stepslivingwill.org

Stuart RB, Thielke SJ. Standardizing protection of patients’ rights: from POLST to MOELI (Medical Orders for End-of-Life Intervention. Journal of the American Medical Directors Association. 2017 Sep 1;18(9):741-745. doi: 10.1016/j.jamda.2017.04.022. Epub 2017 Jun 13.PMID:28623154

Here is a sample of the way one patient personalized the COM in the words underlined —

Conditional Medical Order

Who Are We Caring for in the I.C.U.?

By Daniela J. Lamas

We gathered as a medical team in front of my patient’s room early one Saturday. She was one of the sickest patients in the intensive care unit. Her lungs were destroyed by cancer and a rare reaction to her chemotherapy, and her condition worsened each day, despite aggressive interventions. It was clear that there was nothing more that we could do. Except to keep her alive until Monday.

Struggling to come to terms with this reality, her family had begged us to continue our interventions through the weekend. So we would keep her intubated, deeply sedated and, we hoped, pain-free, performing the rituals of intensive care until the family was ready to say goodbye.

There is a largely unacknowledged moment in critical care when doctors and nurses shift from caring for the patients in front of us to caring for their loved ones. Often these two aims are not inconsistent: Even when family members like these are not ready to stop life-prolonging interventions or ask for a treatment that is unlikely to work, they are speaking on behalf of the patient. But increasingly I wonder if it is possible to go too far to accommodate family. When a patient is at the end of life, what is our responsibility to those who will be left behind?

On another recent shift, I received a call from a colleague at a different hospital. He was caring for a patient in his 60s with severe respiratory failure after a coronavirus infection. The patient’s family was desperate for him to be transferred to our hospital, a larger institution with greater resources. But intensive care unit beds were a scarce resource, and there was no clear medical reason for the transfer. His team had already done everything that we would do, and the simple act of transferring someone so sick could be catastrophic. I was the critical care doctor on call, charged with accepting transfer requests, and it would have been easy to say no. But then there was the matter of his family.

The patient arrived overnight, just as sick as we expected. His oxygen levels had dipped in the move and never recovered. Standing outside his room the next morning, his wife asked me if I thought the transfer had been a mistake.

Maybe it was. Not because his numbers were worse; that was inevitable, regardless of the transfer. But because I had made the choice to bring someone to our hospital in large part so that his family members would believe they had done absolutely everything. Of course, family request alone is not a sufficient reason for a hospital transfer. And though I suspected that we would have nothing more to offer in terms of medical interventions, that was not possible to know with absolute certainty when the other hospital called. But perhaps even more important, I did not want his family to wonder what might have been.

And so the transfer was an act of caring for him, too, to leave his family without regret. I do not believe that we went against his wishes, sacrificed his dignity or caused him pain. When he died a few days later, it was peaceful, with his family at the bedside.

But that’s not always the case. Not infrequently a family will demand that doctors perform chest compressions and shocks if someone’s heart stops, even though we are nearly certain it won’t help. I used to find myself infuriated by these conversations. On occasion I have used hospital policy to take the decision away from the family altogether. But maybe that is not the only response.

Some years ago, Dr. Robert Truog, a critical care doctor and ethicist at Harvard, published a provocative essay arguing that there may be a role for cardiopulmonary resuscitation if it is necessary for the family, even if it will not directly benefit the patient. He told the story of a chronically ill child with a dismal prognosis whose parents were unwilling to stop aggressive measures. During one hospital admission, the child’s heart stopped, and at the parents’ behest, the team moved forward with attempts at cardiopulmonary resuscitation. When the efforts ended and the child had died, the parents entered the room, surveyed the detritus of the cardiac arrest, the lines and the tubes, and surprised the medical team members by thanking them for doing everything. Dr. Truog wrote that even if it was futile from a medical perspective, what he had come to realize was that the procedure let the family members know that the doctors had tried. That was the way to give them a narrative they could live with.

I am still not sure what to make of this argument. We would not resuscitate patients against their stated wishes, regardless of what their loved ones want. But in these moments, we are so often making decisions for both the patients in front of us and the people who will carry their story forward. And so maybe resuscitation attempts can be for a family just as much as or even more than they are for a patient. Maybe in some cases, that is justification enough.

But at the same time, I worry that even if my patients are beyond pain, there is also a cost to those who are forced to perform emergency efforts that are just that: a performance. I wonder, too, whether this very scenario means that doctors have failed. Perhaps if we were clearer communicators, no family members would choose for their loved ones to undergo intensive treatments that only postpone the inevitable.

That Saturday in the I.C.U. passed quietly for my cancer patient. But when I returned on Sunday, I learned that her blood pressure and oxygen levels had started to teeter when the nurses turned her, as they did every few hours to prevent bedsores. The daily activities of critical care were beginning to cause harm. We had planned to wait until Monday to readdress goals with the family, but was that the right choice? I hoped my patient was pain-free but could not guarantee it. And perhaps it was unkind to allow her family to spend another day hoping she might improve when we knew that to be impossible.

We called in her adult children and told them that their mother was dying. They cried and questioned, and I asked myself whether I should have waited, but they ultimately understood. If there was no way that doctors and nurses could make their mother better, then they would focus on her comfort. They gathered by the bedside. We waited for a chaplain. And late that night, in the last of our many rituals, a nurse disconnected my patient from the ventilator, ensuring she had enough medications so that she would not struggle. It was a final act of compassion, at once for the patient, her family and for us, too.

Complete Article HERE!

Talking about the value of death

The Report of the Lancet Commission on the Value of Death, subtitled ‘Rebalancing and Revaluing Death and Dying: Bringing Death Back Into Life’, is a timely, cogent and illuminating foray into an aspect of life that few seem to consider, despite it being the one thing that we have in common – we, and everyone we know, will all die someday.

By Sean O’Connor

The Report of the Lancet Commission on the Value of Death, due for imminent release, is part of a series of publications featuring the collaborative work of a broad and diverse range of academic partners, writers, activists, and others, who investigate the world’s most urgent scientific, medical and global health concerns. Their aim is to assess a prevailing issue and provide recommendations that could change health policy or improve practice.

This particular report, subtitled “Rebalancing and Revaluing Death and Dying: Bringing Death Back Into Life”, is a timely, cogent and illuminating foray into an aspect of life that few seem to consider, despite it being the one thing that we have in common – we, and everyone we know, will all die someday.

The Report on the Value of Death is arresting for several reasons, which benefit from a nuanced understanding of what professor emeritus at Arizona State University and author Robert Kastenbaum has termed “death systems”. These are “the means by which death and dying are understood, regulated and managed”, which Kastenbaum first described as “interpersonal, socio-physical and symbolic networks through which an individual’s relationship to mortality is mediated by society.”

These systems are complex, multidimensional and mutable, not easily changed, and shaped by spectrum of cultural, religious, spiritual, political and legislative practices, which “implicitly or explicitly determine where people die, how dying people and their families should behave, how bodies are disposed of, how people mourn, and what death means for that culture or community.” (The report limits itself to death and dying, and does not examine what happens to the dead.)

“Society and the medical world have considered black lives cheap.”

Death systems, the authors point out, are “not benign”. An afterword by Mpho Tutu van Furth, a South African Anglican priest, author and activist who has lived in the US, provides a corrective to the predominantly white, wealthy and Western perspective that embeds itself in much of the report’s narrative, which the commission is self-consciously aware of.

Writing from her own perspective and not “on behalf of two-thirds of the world’s population” who do not enjoy access to healthcare, she attests to her own experience as a black South African woman and mother to two African American children, picking apart the cultural anomalies she witnessed growing up and going some distance further.

“I saw the white flight from ageing and death,” she writes. “Black people had no illusion we could escape death. Black South Africans did not desire immortality. In death we would be gathered with our ancestors. ‘Going home’ to our forebears was considered the reward for a life well lived.”

This, however, takes place in the context of malevolent racism, both in South Africa and the US. “Society and the medical world,” she writes, “have considered black lives cheap.” She squarely accuses racism as a determinant of death’s value, saying that to “ascribe the correct value to death we must assign the right price to every life”, and provides the example of how Covid has disproportionately affected and afflicted black people everywhere.

Initiated before the current pandemic, the report nevertheless situates itself here, yet looks to the future.

Interestingly, it presents evidence that our collective experience of death during Covid has “further fuelled the fear of death”, instead of the opposite. Daily death tallies and statistics have not normalised death or brought it closer, but spurred further abstraction. Supporting this claim, the report draws attention to the extreme “medicalised death” (for some) that Covid has provided: death that has occurred in the forbidden province of a sealed hospital, staffed by masked and muffled and often stressed personnel, with limited communication between family members. We’ve had more death, but moved it even further away.

The authors note: “The increased number of deaths in hospital means that ever fewer people have witnessed or managed a death at home. This lack of experience and confidence causes a positive feedback loop which reinforces a dependence on institutional care of the dying.

“Medical culture, fear of litigation, and financial incentives contribute to overtreatment at the end of life, further fuelling institutional deaths and the sense that professionals must manage death. Social customs influence the conversations in clinics and in intensive care units, often maintaining the tradition of not discussing death openly. More undiscussed deaths in institutions behind closed doors further reduce social familiarity with and understanding of death and dying.”

“Death is essential… Without it, every birth would be a tragedy… and civilisation would be unsustainable.”

This experience, reinforcing the pervasive idea of healthcare services as the legitimate and proper “custodian of death”, is a trend initiated generations ago for a bevy of reasons. The authors relay that over the past 70 years, the “shifting role of family, community, professionals, institutions, the state, and religion has meant that healthcare is now the main context in which many encounter death”.

A natural death, in this paradigm, is simply considered as the cessation of medical support, and, according to the social critic Ivan Illich, “dying has become the ultimate form of consumer resistance”. (Similarly, the co-founder of the Death Café movement, the late Jon Underwood, found a strong parallel between death denial and consumer capitalism. We buy stuff to perpetuate the idea of immortality through ownership, to feel alive, imagining that possessions confer meaning to life. Yet even if they last, we don’t.)

The responsibility of healthcare, commonly understood as the prolonging of life and avoidance of death, therefore regards death itself as a failure. At the heart of the report is an urgent and radical proposal – that we unpick and redetermine what medicine should do, and revalue death, recognising that it is not only normal and natural, but valuable, and has much to teach and bestow on us. After all, we were designed to die. We are a part of nature, as the pandemic has reminded us. “Death is essential,” the authors write. Without it, “every birth would be a tragedy” and “civilisation would be unsustainable”.

In rediscovering the intrinsic value of death, lost in the attrition of community skills and experience in care for our dying, and the concurrent emergence of life-saving medical technologies and the outsourcing of death, we are now urged to bring death closer, to talk about it and recognise that it provides an opportunity to build and maintain the relationships that sustain life itself.

In losing death, we lose life.sp;

That death has become rarefied, obscured, mystified and hidden is a core problem, entrenching an imbalance that the recommendations of the report attempt to address in practical terms. The commission (which is how the authors refer to themselves, continually incorporating new members and ideas and inviting participation at every turn) is essentially concerned with the different ways we die, and proposes that death, dying and grief provide an acute lens not just into different death systems but into structural inequality and power dynamics which need urgent attention and change.

For example, women are disproportionately affected by death, and are typically seen as caregivers for the afflicted and dying, spending at least 2.5 times more time than men in unpaid care and domestic work. (In my own group of death doulas and end-of-life carers, for example, I am the only person who identifies as a man in a group of 40 women.)

In addition, widows are routinely stigmatised, in both rich and poor contexts, and commonly denied access to property or assets after the death of a spouse, whose existence often defines their own, and sometimes forced into degrading post-marriage rituals (treated as common family property) or shunned from employment or society. In middle- and high-income environments too, widowhood presents difficult social barriers and loss of status, income and life chances.

We are continually reminded in many examples in this report that the “impact of race, class, gender, sexuality, socioeconomic status, or other forms of discrimination on mortality rates, access to care, or the incidence of diseases or conditions, is well established”. Indeed, inequality is emphatically expressed in the perverse finding that those who receive the most care often don’t need it, while those who need it the most don’t get it. Poor people usually experience poor death. The relatively well-off may attempt some form of inoculation via medical care, but this too tends to have an often poor result. Death could clearly be better for everyone. The authors contend that “most conditions for a good death could be offered to most dying people, without costly medical infrastructure or specialised knowledge”.

At the heart of this paradoxical imbalance, the report locates the prevalence of “overtreatment” at the end of life as a particularly pernicious and often damaging practice and one which consumes a massive proportion of healthcare budgets the world over.

A startling finding is that in the last month of a person’s life, whether in a resource-rich or poor context, a stupendous spike in costs usually occurs, frequently bankrupting surviving family – despite having no positive benefit to the dying, and often increasing suffering.

But perhaps this is old news for people who’ve found themselves in this situation, unable to delimit potentially life-extending treatment, which doesn’t necessarily improve the quality of life at all, for fear of being held accountable for death, or hastening it, and going against the grain of the medical impetus to prolong. In my own experience, I recall the glee conveyed by a daughter and her terminally ill mother who had together decided to abandon the crippling costs of another round of pointless chemotherapy and go on a final road trip together instead.

Medicine’s remit to extend life isn’t appropriate where there is no realistic prospect of influencing life’s quality. While the palliative care movement is fortunately making strong if uneven advances for limiting pain at the end of life, and building models of holistic, integrated and team-based care that includes families to provide support that focuses on improving life’s quality in balance with death’s inevitability, far too many people die of common conditions that could be treated, and with no pain relief.

The World Health Organization reports that only 14% of people needing palliative care receive it. (This is the focus of a separate Lancet Commission report but is frequently referred to here.)

The report, drawing from a deep well of research (all of which is available on the commission’s website) presents fascinating evidence of the frequency of hope and bias as causes of overtreatment, further entrenching the medicalisation of death. Hope, they posit, can encourage confirmation bias, where the subconscious selection of information usually accords with a desired outcome – to stay alive. This racket is often run in collusion with afflicted individuals, their worried families and healthcare professionals alike. Bias similarly expresses itself in treatments recommended with little chance of success, even at any cost.

For example, in a study of 1,193 patients with late-stage cancer, 60% and 80% respectively of those with lung cancer and colorectal cancer receiving palliative chemotherapy “expected the treatment to cure their illness despite the treatment not intended to be curative”. Doctors, meanwhile, routinely show bias in their assessment of the likelihood of curative treatment. Better conversations need to happen, that recognise and are free of fear.

Perhaps this is unsurprising in a system where relationships and networks are replaced with professionals and protocols. In Cape Town, I recently listened to an esteemed city official describe ways to “optimise death chain management” during the pandemic. Psycho-spiritual support and home-based community care were off the radar.

Of several discrete yet overlapping sections in the report, the chapter on “advanced life directives” is particularly convincing as evidence that a positive shift in our death systems can be achieved through a reorganisation of relationships, without much expense.

Considering the level of end-of-life you deem appropriate (such as no insertion of artificial feeding tubes) can form part of a healthy communication between family members, and provide a binding template for your instructions when you may no longer be able to convey them, especially to medical staff. This, the authors suggest, should not be regarded as a “difficult” conversation, but recast as an “essential one”. (Readers might find some assistance here)

It seems like we have lost the ability to talk about death, as though talking about it is morbid, even fatal… We can perhaps embrace the idea that talking about death is good for life.

The report suggests that this conversation is seen as a process rather than an event, and draws from Atul Gawande’s seminal book, Being Mortal, to help frame this. In the context of illness, he asks: What is your understanding of where you are and of your illness? What are your fears or worries for the future? What are your goals and priorities? What outcomes are acceptable to you? What are you willing to sacrifice and not? And later, what would a good day look like?

The consequences of not having these conversations are severe. Having them, on the other hand, can limit suffering and provide pathways to healthy grief and loss that is less complicated than it might be. It seems like we have lost the ability to talk about death, as though talking about it is morbid, even fatal.

The death doula movement, the palliative care movement and other cultural projects promoting awareness of death, such as Death Cafés and the “death positive movement”, are changing this. These have, argues the sociologist Lyn Lofland, even heralded the age of “thanatological chic”. Perhaps this is necessary. For a rebalancing and revaluing of death, the report suggests, entails the active promotion of “death literacy”, which is something we can all learn. Evidence suggests, the report says, “that talking collectively about these issues can lead to an improvement in people’s attitudes and capabilities for dealing with death”. We can perhaps embrace the idea that talking about death is good for life.

This requires more change. The report mentions that until relatively recently, just two generations ago, most children would have witnessed a dead body. Now however, it is deemed some kind of aberration to have seen a corpse, as something remarkable and untoward, even unnatural. Many people in mid-life have never laid their eyes on the lifeless remains of a former co-traveller. We have become alienated from death, treating it as something to be avoided. Indeed, a plethora of scientific, technological, social and even religious endeavours reveal, in their quest for immortality, a possible anxiety that life is somehow insufficient and lacking. This impulse to escape mortal confines raises some profound philosophical, ethical and practical questions, not least of which is a question about access and further inequality. (Mpho Tutu van Furth’s earlier testimony regarding the welcoming return home in death for black Africans is a useful counterpoint, once again.)

Several of these initiatives are briefly described in the report, encompassing a quest to preserve life through anti-ageing techniques and a confabulation of associated technologies, the lasting idea of a magical elixir, uploading a digital mind and memories to the cloud, cryogenics, cloning, the egoistic impulse to create “legacy”, even the belief in an immortal soul forms part of this complex – which, bluntly, is an aversion to physiological death and pulling away from the thing that is most essential to life – our death. The Scottish-born former director of the Institute for the Future, Ian Morrison, is quoted here, joking that “Scots see death as imminent. Canadians see death as inevitable. And Californians see death as optional.”

Assisted dying, which is legal in Canada, receives broad examination in the report. As it seems likely to become more widespread, according to the authors, and is the subject of increasing debate worldwide, including South Africa, the report provides a refreshing summary of questions about assisted dying that demand further inquiry. These are proposed without the delimiting taint of an imposed morality, which often confounds consideration of this very germane topic.

A similarly dispassionate yet inspired gaze is deployed into consideration of five possible future scenarios for death and dying, as well as an extensive description of the remarkable paradigm shift in Kerala, India (population 35 million) where “dying from a life-limiting disease is a social problem with medical aspects rather than the commonly held converse view”.

The report concludes with a list of recommendations organised into various categories and the enumeration of the qualities required for what the authors describe as a “realistic utopia”, a desired model inspired by the Keralan example, and a way that each of us can work to change the death systems we inhabit.

Briefly, these qualities are: that “the social determinants of death, dying, and grieving are tackled”; that “dying is understood to be a relational and spiritual process rather than simply a physiological event”; that “networks of care lead support for people dying, caring, and grieving”; that “conversations and stories about everyday death, dying, and grief become common”; and perhaps most importantly, that “death is recognised as having value”.

Incredibly, even though death and dying are part of life – an everyday part of life affecting us all, as we are continually exposed to the death of others and live with the certainty of our own mortality, indeed, are embroiled in the twin process of living and dying in every moment as we move from birth – death is not only absent from many medical conversations, but social ones too.

This report encourages the fact that we clearly have much to talk about. Death is part of life, not something that happens at the end of it. Breaking the taboo about speaking about death feels transgressive and can be revelatory.

Revaluing death, as this remarkable report suggests, has the profound ability to make lives better. The philosopher Martin Heidegger, who examined our relationship with death and who is quoted in the report, reminds us that although we may apprehend the death of others, no one else can “die my death for me”. Acknowledgment and contemplation of this ineluctable fact free us to “authentically become who we are” and, hopefully, encourage us to take up the shared responsibility of affording the same value to the death, and life, of everyone who draws breath.

Complete Article HERE!

Mary-Frances O’Connor Recommends Readings for the Grieving Brain

The Psychologist and Author Shares Her Picks for
Understanding Life’s Lows

By Mary-Frances O’Connor< In The Grieving Brain: The Surprising Science of How We Learn from Love and Loss, I make a distinction between “grief” and “grieving.” Grief is the wave that knocks you off your feet and surprises you with both its ferocity and its strangeness, nothing like the simple sadness that we might have expected. But having authors who have depicted their excruciating experience for us makes us feel less alone, or at least more normal, and thus these books are invaluable. Grieving, on the other hand, is how the feeling of grief changes over time without ever going away. Grieving is the process when we come to discover that we must carry grief with us, carry on with the grief in tow, while somehow restoring a meaningful life. We are not alone in this either, because creating a meaningful life is a never-ending process; learning how other authors have done it—reflecting on their philosophy—connects us all in this universal human trademark experience.

It's OK That You're Not OK

Megan Devine, It’s OK That You’re Not OK: Meeting Grief and Loss in a Culture That Doesn’t Understand

Recently, a dear friend has been grieving the death of his mother, has been distant and avoiding our circle of friends, and has erupted in anger at seemingly minor moments. I recognize his path, walking through the dark night of loss. For him, and for others acutely grieving or struggling over time, I recommend Megan Devine’s fantastic account of how to avoid the “tyranny of positive thinking” that many bereaved people are confronted with. She explains why words of comfort can sound so bad and enables me to invite my dear friend to share with me what it feels like to be him, living inside grief.

Year of Magical Thinking

Joan Didion, The Year of Magical Thinking

Joan Didion’s story of not being able to throw out her husband’s shoes after he died because he would need them again may have been my first inkling that the brain can really be drawing on two different sources of information at the same time, even if they conflict. Through Didion’s honesty and courage about her own grief experience, she reveals the lived experience that led me to develop the gone-but-also-everlasting theory: when we bond with a loved one, that bond is encoded in the brain with the incontrovertible belief that our one-and-only will always be there. This conflicts with the memory of their funeral, with their absence at breakfast, lunch, and dinner. As a neuroscientist, Didion’s brilliant writing made me understand magical thinking is not to be ignored as the ravings of grief but could reflect exactly how the brain processes the world.Man's Search

Viktor Frankl, Man’s Search for Meaning

My mother died when I was training to become a psychologist and, in the wake, I sought out a clinical practicum working with terminally ill prison inmates. Perhaps because my scale for what “awful” felt like had been completely rescaled? In any case, I did not have the training to work with the life-sentence, unable-to-speak-from-throat-cancer inmate I counseled for several months before his death. And so, I read Viktor Frankl’s writing about his experience in a Holocaust concentration camp, thus shaping my understanding that when the worst possible thing is happening, you can find meaning. Or at least you can go on…because they did. And there is beauty in that connection, which helps you go a little further.

Hold Me Tight

Sue Johnson, Hold Me Tight: Seven Conversations for a Lifetime of Love

To understand grief, you must first understand bonding, since you cannot know what has been lost unless you understand what it was you had. And if you ever hope to restore a life full of loved ones, knowing how to build them is key. There is no better insight into close relationships than the work of Sue Johnson. Even as a clinical psychologist, this book helped me to understand my relationships, past and present, more deeply and clearly than I ever had before.

How to Live Good Life

Massimo Pigliucci, Skye Cleary, & Daniel Kaufman, How to Live a Good Life: A Guide to Choosing Your Personal Philosophy

With a name like mine, it will come as no surprise that I was raised Catholic. After my father died, I thought a lot about how he had created a meaningful life and the relationship between his faith and his actions in this world. Although I spent years engaged in Quakerism and then Buddhism, I had never settled into a faith community. In my quest to discover the philosophic or religious views that resonated with my own, I found the collection of short essays by Pigliucci, Cleary, and Kaufman to be a valuable guide, offering me new insights into classical religions and introducing me to new philosophies such as effective altruism.

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The Grieving Brain

Mary-Frances O’Connor’s book, The Grieving Brain: The Surprising Science of How We Learn from Love and Loss is forthcoming in February 2022 from HarperOne.

Complete Article HERE!